My cat doesn't like Rabbit-flavoured Go-Cat. Much as she is obviously grumpy about this, it doesn't match my day, and she'll need to wait for the Sainbury's delivery that will arrive later on.

Today I went for my 'Pre-Operative Assessment'. It was a good job that I arrived early because I didn't leave hospital until 12.30pm, and I had my own busy clinic starting at 1pm.

The first thing was the weigh-in, which wasn't going to be pretty anyway. I am sure after the 2-day Bowel prep diet, I will have lost another 4kg at least! I had my BP taken which was 130/74 and then I was asked all the medical questions by the nurse - e.g. previous surgery, heart/lung problems, what medications am I taking? etc etc. After this, I had to go and have some blood tests done so that they could do a cross-match for surgery, and check my blood group and iron levels. I then went to see (one of) my Consultants.

The first thing that my consultant asked was what I wanted/how I felt about things. I explained how when I had the endo, I had constant pain and no quality of life, how all this had been going on for years and how now what was important to me was quality of life. The consultant said that sadly the endometriosis has been left for ten years, untreated, and that through no fault of their own, the other 'experts' had just gone in via laparoscopy and then left things. All the Zoladex has done all this time has cover up all the symptoms. Hearing all this made me feel quite devastated just because it is ten years of my life that has been thrown away through other surgeon's ignorance. I am also feeling angry about it.

This consultant said that my surgery is going to be aggressive - to say the least, I'd say. They are apparently expecting me to be 'covered in it' and for all the area around the bowel, ovaries, bladder and ureters to be stuck together. They are going to do a cystoscopy (having a look inside the bladder), A hysteroscopy (looking inside the uterus), then they will do a laparoscopy and remove every cell of endometriosis they can. There is a possibility that I will lose an ovary and that they might need to cut some of my bowel away and re-stitch it, but if they damage it I will end up with a temporary colostomy bag. If they can't get rid of all the endo on the ureters then they might have to put a stint into them (if they cut them). They will do a laparotomy if they cannot access all the endo. They will end up by inserting the Mirena IUD if they think it will the right for me. Finally, there is a possibility they might not get this all done in the one surgery, or it might be too much for my body to cope with, so they might have to do a 'round two' in three months time. I really hope this doesn't happen.

To be honest I had no idea that my surgery could be so involved. But they have ten years of stuff to laser away, old scars from previous surgery to negotiate and adhesions. The consultant said it could take up to 5 hours.

I will be in hospital 2-5 days - probably leaving between Friday and Sunday, again all this depends upon what I end up having done and how well I recover after all of it.

I am also taking part in a study to do with the optimal removal of catheters post endometriosis surgery.

I am still not able to arrive at hospital on Monday night, but they have now agreed I can go straight up to the Gynaecology Ward first thing on Tuesday morning, so I know where I am going to be afterwards, and so I can unpack etc. This is a bit of good news.

Finally, the dreaded Bowel Prep diet means I will be on a liquid only diet for 2 days prior to Tuesday, so that really doesn't sound fun, and am not looking forward to doing it much either.

My head is swimming with all this new information. I know the doctors have to spell it out, but I had no idea it was going to be as drastic as this - but that is because none of the other doctors have done much to me in the past. I can see now that if it wasn't for me trying lots of complementary therapies in the past, especially Bowen that I would be in an even worse mess than now. The Bowen Technique has kept me going all this time, helping with the worst of the pain when I had periods, as well as Morphine.

Tuesday, August 28, 2007

I would just like to write today that I really value and appreciate my friends. A number of them have said they will visit me, whilst one person has even nominated her husband to drive me to hospital if I go in on the Monday, and she and another friend will personally ensure I get there OK!

I have a lovely friend who will pop in and out on my first discharge weekend, if I am out by then. I also have other friends who are doing things like looking after my cat.

I may be single at the moment :( but in the absence of an actual partner, I am enormously glad I have a very good group of friends. You know who you are, and thank you in advance for coping with a potentially very grumpy woman!

Saturday, August 25, 2007

After a year Tampax free "It's my life...."and being a blissful menopausal state in both the men and mensus sense, I am resigned to the fact that I am going to bloody well have to fork out for STs again. OK the Government may have waivered the VAT, but it still kinda grates.

Whilst tucking into some very nice Cornish Ice-cream, I was reflecting upon what I'd like to have for my last supper, which I may hasten to add, will be 2 days before the op. Since it has to be food that is both dairy-free and low fibre (oh goody no fruit or veg!) then it will be a bloody rare burger from GBK with chips - well they don't count as potato surely? I would wash this down with some chocolate, or something.

Anybody else got any good ideas?

Seriously though, If it were possible to choose your very last supper, what would you really eat?

I can't believe that it is now two weeks to go until my laparoscopy, or 'lap' as they are more affectionately known by women with endo. Time seems to be slipping away fast, and with it my perfect pain-free life.

There is no doubt that I feel resentful about this operation, that I don't want it or the new mirena coil treatment at all. I would just love to retain this present and blissful 'status quo' regardless of the long-term side effects of my present Zoladex regime. I am wondering how I can communicate this to my consultant.....

Sunday, August 12, 2007

· I am particularly anxious about this surgery, and wondered whether I could have a Pre-Med on this occasion?· I get very sick when I am on Morphine, so please could you ensure you give me plenty of anti-sickness medication?· I get very frightened about having the actual injection that puts me to sleep – any advice?

Medications that I am taking Regularly:Zoladex 3.6mg – last injection (either 30/8/07 or 3/9/07)Tibolone – 2.5mg – This was stopped on 6.8.07, one month before surgeryBeconase nasal spray - two sprays daily (for hayfever etc)Duloxetine – 30mg – I am coming off this drug, so am now only taking this occasionally Lamitrogine – 50mg – taken once a day

Painkillers I like taking (or help):Syndol (allegedly for migraines, brought OTC). Has codeine, paracetamol and other stuff in it – a muscle relaxant. Co-Proxamol (now no longer available, sadly)Co-Codamol – not as good as the above.Voltoral – suppository only (I get nauseous with the tablets – taken too much of this in the past, so stomach is less tolerant)

Drugs that I have had adverse reactions to in the past:(Main problems caused – sickness/palpitations)Dotheipin – gave me very severe palpitations Tramadol – gave me very severe palpitations (happened once)Morphine/strong opioids make me very sick, so although I they help, must be given with plenty of anti-emetic injections, or things get very messy!!!

I have a disc prolapse at L4/5, and a very hypermobile spine that will get very irritated with lying very flat. I have been given lumbar epidurals in the past which have been extremely effective for management of chronic pain in this area.

Post-Operative:· I don’t mind what medication I have so long as I am not vomiting!· Unfortunately the whole pelvic area/lower back area is now highly sensitised because I have had so much pain in that area over the years, so please feel free to bomb me out as much as you want. I will then be much less grumpy to the ward staff!

· If this all goes wrong, or the Mirena doesn’t suit or help me, is there any going back to the Zoladex regime? I am obviously happy to give this a go, but want a get out clause if it doesn’t work.· I am very scared about this – not so much the surgery, but it is just that I have been so physically well over the past year, I am very frightened that this is all going to be taken away from me. Discuss!· As well as sorting out my bladder and bowel and any other endometriosis found in my pelvis, will you be able to remove my fibroids and sort out the cysts on my ovaries?· Can you remove any adhesions if there are any?· If part of my reproductive anatomy was too damaged, would you remove it in this particularly operation?· Are you going to be able to see the endometriosis given that I have been on a GnRH analogue based treatment for over 12 months?· Given that I have ongoing problems with my back, which have been far more minimal over the past year, is it possible I have endometriosis in that area, or is just that the nerve supply is irritated there? I have a known disc prolapse at L4/5 and degeneration there.

Problems that I had, whilst menstruating:· Bleeding from bowels, deep pain in the area when going to the toilet· Unable to pass urine – often taking ten minutes, even on a full bladder, pain and irritation from this. · SAExtreme pain, often needing very strong medication and hospitalisation· Fatigue and sleeping problems· Pain (in varying degrees) for most of the month)· Severe depression, in addition to mood swings· Back pain significantly worse (presently very well managed)· Last scan in July 2006 showed small uterine fibroids and cysts on ovaries. My cervix and uterus are also retroverted which has often meant that my smear tests have had to be repeated. Smear taken in July 2007 was normal.

I am obviously hoping that following a return to having periods, in whatever form they present with the Mirena Coil in situ, that the above symptoms are very minimal!

I am so scared about it all because things have been so out of control for me most of the time, and I have only been well whilst on Zoladex, which is why I don’t really want to come off it. I think that if all this comes back I will not be able to handle it and will not want to live through more of this hell.

When it first happened, I thought that the blood would be bright red. Nobody told me that it might look an old, rusty brown colour. I was just twelve and a half. It was my first menstrual period.

I remember being given ‘sanitary towels’ that they seemed like wearing nappies. I was relieved to learn about the alternative. Tampax. “It’s my life…” Freedom.

At first the pain wasn’t too bad. In fact, my overriding memory at the start is of having to wear my PE kit one Friday afternoon because my flimsy school summer dress was soiled in blood.

Whilst I had no interest in sports at school, I used to do a lot of classical ballet and could easily do many of the ‘recommended’ stretches for relieving menstrual cramps.

By the time it came for me to do my GCSE exams, I had already spent several monthly mornings in Sick Bay. I had already tried the first line in basic ‘home’ pain management─Paracetamol and hot baths.

When it came to my A-levels, my then GP was more than happy to prescribe the Pill. I remember my mother saying that she could not believe that there was nothing better for period pain (having suffered herself). This was in 1993.

I then tried various forms of the Contraceptive Pill whilst at university. I would find them successful if they did not make me want to eat cake all week, or if I could physically stand up without crumpling in pain when my period was due.

My first visit to a gynaecologist was in 1994. I was just nineteen. He was quite an old man. I remember him saying that I just had ‘Primary Dysmenorrhoea’ (Pre-childbirth period pain) and that it would all improve when I had a baby. It was a horrible and degrading experience.

Not long after I graduated in 1997 I remember having some ‘period pain’ so bad that I passed out. The pain was so intense that I was completely incapacitated. It didn’t take my first employer long to realise that I was taking half and full days off on a rather cyclical basis. It was humiliating to say the least to have to explain to the Chief Executive (a man in his late 50s) why I was absent on a monthly basis. I was urged to ‘do something about it.’

My latest GP by this time also thought that having a baby would solve all my problems. I was only twenty three by this time, and had only just started my career.

I saw another gynaecologist who gave me a scan, which showed nothing, and also did a laparoscopy where she casually mentioned that she found ‘tiny amounts’ of endometriosis, but that there was nothing that could be done, and that it might be worth me following a low-wheat diet, and keep taking the painkillers.

I tried the ‘healthy and nutritious’ diet approach. I also tried a range of complementary and alternative therapies.

Another gynaecologist suggested a hysterectomy (and laughed), and then said, “Why not try a progesterone only pill?” I hated it─put on weight and was still in pain.

In 2000, another gynaecologist said after doing a laparoscopy that she couldn’t find anything other than old and dead endometriosis. I was told that my problem was psychological, and was sent to a Pain Management Consultant.

In 2002 I saw a gynaecologist who diagnosed that I had Moderate-Severe Endometriosis. It was also found to be in my bladder and later in my bowel. In 2003 I was diagnosed with ‘Moderate Clinical Depression’, and who can blame me?

Endometriosis is as yet a little-known and poorly understood condition where the menstrual flow escapes the uterus and is often found in other areas of the pelvis, and rarely elsewhere in the body. It can affect a woman’s fertility and cause a great deal of pain.

It is now 2006. I have just had two hospital admissions within a week of each other, to manage my pain. The second stay involved the use of morphine, a drug I thought used exclusively by Cancer patients. This condition has caused serious damage to both my career and long-term relationships.

I had six months off work in 2001, and have not managed to work full-time since then.

My last long-term relationship ended at the beginning of this year.

The pain is debilitating. My back feels as if it has been stabbed and my ovaries feel as if they have corkscrews going through them. I can hardly stand on the bad days. I have suffered from depression since 2003, and believe that this is very much related to the endometriosis.

Last year I was on of the lucky ones. I had tests for fertility, including a blood test, a scan, and a dye injected to see if my fallopian tubes were blocked. I passed all my tests, but as yet I am unsure if I want to have a baby.

What future can I offer a child when there are frequent days where I am unable to look after myself, quite aside from being single?

Recent treatment programmes have involved barbaric hormone injections which completely stop my periods, and then I take HRT to ‘put back’ some of the hormones I lose during this false menopause.

Just lately, (having found out I also have small fibroids and Polycystic Ovarian Syndrome) I asked my present gynaecologist if I could have a hysterectomy. I was told that I ‘could not’ because I am only 31 and because I am at an increased risk of heart disease etc., from being on HRT. Having a hysterectomy at this stage might shorten my life, as well as completely end the possibilities of having a child.

I find myself confused. When I end up in as much pain as I have been, I find that I would now wish for a shortened quantity of life, for quality of life.

As the adverts of Tampax used to say, “Tampax Freedom, it’s your life.” It is my life, and I believe that I have a lot left to do in it. Period.

Approximately two million women suffer from Endometriosis. To find out more visit Endometriosis UK at www.endo.org.uk.

Isobel Knight February 2007

PostscriptI am presently happily on the GnRH analogue treatment method (Zoladex) which works really well on me.

I have now had two dreams in recent weeks about being under General Anaesthetic. In the first dream, the muscle paralysis part of the GA had worked, but I was not sedated enough, and I could feel everything that they were doing, but not move. To me this is a very powerful representation of the feeling of powerlessness I feel both about the endometriosis and the forthcoming surgery.

In the second dream, I remember being on the ward, and being asked to be 'nil by mouth'. In my hunger, I decided to have a few Borbon biscuits. When I told the anaesthetist, he said this was the worst type of food I could have eaten! When the trolley came up to the ward, the nursing staff were debating whether to send me or another patient. I begged them to send the other woman, but they chose me...... Later in the dream, I came out of the GA towards the end of the procedure. I finally managed to make my voice heard and could see, hear and feel everything. The surgeon realised I was awake and the anaesthetist gave me some more anaesthetic, but it didn't seem to be working. He gave me some more, said to the consultant, 'that should do it' and left me. The surgeon was about to continue to do more, but realised I was still conscious. He then sent for the anaesthetist, who seemed to have done a total disappearing act. In the end, the surgeon and his colleague decided to half patch up my open abdomen and send me back to the ward, with the intention of completing the job properly in the morning. I remember smelling this putrid smell, which must have been my rotten guts. When the consultant came to see me in the morning, he said that I was 'covered in endmetriosis'.

Again, I think this dream sums up all my fears about the powerlessness I have in doing anything, and the lack of control I have when I will be 'under the knife'. I am sure these dreams must be common, but they are still frightening!

Thursday, August 9, 2007

It is now less than four months until my laparoscopy, so one last month enjoying the pure bliss of feeling physically well, and not in any pain.

I was asked to stop the Tibolone (HRT) four weeks before my surgery, which I have now done. I must say that my penultimate Zoladex injection was actually very painful - the GP who did it this time must have hit a whole load of skin nerves. I will watch out for a bruise this time!

I am hoping that I will not suffer loads of hot flushes in this HRT-free time, particularly as the weather has at last cheered up and is finally quite warm.

The Endo online chat boards have been full of quite bad post-lap pain and a few things about the insertion of the Mirena coil. I am still not overjoyed about this potential treatment, still I have no choice but to try it.

About Me

I am a Bowen Therapist and I am an active researcher and published author on hypermobility, hypermobility spectrum disorders and hypermobility Ehlers-Danlos Syndrome.I wrote a patient-led book about Joint Hypermobility Syndrome which was published with Jessica Kingsley Publishers in July 2011, and came out as a 2nd Edition in 2014. My second book about the management of Ehlers Danlos Type 3 - Hypermobility Syndrome came out in 2013! I also co-authored a book with John Wilks about Bowen Therapy in 2014. I also write poetry and 'The Skin Collection' was published in 2009.

What key piece of advice would you give to someone having a laparoscopy?

Endometriosis and Chocolate Cyst

DISCLAIMER

This Blog will not name any hospitals or doctors. Neither will it recommend any particular hospitals or doctors. This Blog will attempt to show a balanced view of procedures and sited information. It should be noted that some of the experiences documented are personal, and this should be borne in mind.

This Blog does not and should not substitute medical advice, and if a patient is reading this and is in any doubt about her symptoms, or medical condition, she should seek the advice of her own GP or specialist.